24/7 Caregivers

Each individual with Turner Syndrome is unique, and some have complex needs that require long-term, 24/7 care. This could be for a variety of physical, behavioral, developmental, or emotional reasons. This circumstance often presents a challenge not only for the individual with Turner Syndrome, but also for their caregiver(s).

The 24/7 Caregivers group aims to provide peer support for caregivers of these individuals. Caregivers are able to provide the best support possible for their loved one when they, themselves, are cared for. This group is a place for caregivers to share experiences, ask questions, express concerns, and learn, in a safe, accepting space.

Are you a caregiver of a low functioning individual with TS who cannot mainstream or function independently, who requires emotional, physical, and medical supervision 24/7? You can sign-up to join the group by completing the form below. Once your application has been received you will be sent an invitation to join our private Facebook group.

There are many helpful resources available on this website. Start by viewing the Insurance Assistance Resource page.
There is also a published resources available for purchase in our shop: ‘A Lifetime of Advocacy: What Individuals and Families Living with TS Need to Know’ Although many with TS will not qualify for this benefit, there are always exceptions.
You may visit the Social Security Administration’s website, to take a quiz to see if you or your child qualify. You may view on-demand recordings of webinars on the subject of self-advocacy.
Do you qualify for SSA benefits? Go to https://www.ssa.gov/prepare.

“My name is Lori and this is my 33 year old TS daughter, Julie. We found out that Julie had TS at 6 weeks old, but we had a very difficult time finding the support and information we needed to navigate the obstacles that it brought to our family. Julie is diagnosed as Multiple Handicapped since she is learning disabled, developmentally delayed, and has behavior issues. She lives in a group home and will for the rest of her life. We went to a TS support group when she was a baby but found the meetings to be depressing for us since Julie had so many issues. It has taken me a long time to come around to opening up about Julie and what our life was like. But I have come to realize that there are other families out there that are struggling with similar issues. I feel that there is a need for a 24/7 Caregiver group so that we can help and support each other.”


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